When I was born, I was diagnosed with a serious heart condition and my parents were told I might not survive the night. The experts at Cincinnati Children’s were called in immediately, and 28 years later, I’m still going there for care.
I was diagnosed with a bicuspid aortic valve, and cardiologist appointments filled my first year – weekly, biweekly and then monthly. I got a balloon valvuloplasty in the catheterization lab at 15 months old.
My childhood had a lot of milestones. My parents regularly heard phrases like, “We don’t know if she’ll make it to a week old,” and then “We don’t know if she’ll get to be a month old,” and so on and so forth. Now that I have two young kids of my own, I can’t even imagine how they got through that.
When I was a child, my pediatric cardiologist always had me teach him what was wrong with my heart. That way, as I got older, I would be able to advocate for myself with my doctors. With this teach-back approach, I felt empowered to do different things like play basketball, soccer and track. Even though these high-cardio sports concerned my mom, I was confident in knowing my own body and wasn’t worried about it. I continue to use that knowledge today as an adult.
A Seamless Transition to Adult Care
As I got older, I knew I’d have to switch from traditional pediatric care at Cincinnati Children’s. I knew I needed to stay in the care of a cardiologist since I do still have some leftover issues with my heart. I was really nervous about transitioning to adult cardiac care because Cincinnati Children’s was the only place I knew – I’d never gone anywhere else for heart care. I worried another doctor wouldn’t know what was going on with my heart. That’s why I was relieved when I learned Cincinnati Children’s has an Adult Congenital Heart Disease (ACHD) Program.
Despite my fears, my move from pediatric to adult care could not have gone more smoothly. I transitioned from pediatric care to the ACHD program while pregnant with my first child. The cardiologists at Cincinnati Children’s worked with my OB/GYN throughout my pregnancy. I transferred completely to adult care after my delivery. The timing and care were seamless.
When my husband and I decided to have children, we didn’t know what the regular changes your body goes through during pregnancy would do to my heart. My Cincinnati Children’s adult congenital cardiologist was a part of the conversation. It was comforting to know my doctors understood my health needs and could help me make an informed decision. Since we were not sure exactly how my heart would react during pregnancy, my knowledge gave me something consistent to rely on. I know how my heart works. I knew what was changing. And I knew I was in good hands.
The doctors at Cincinnati Children’s know my background and how my heart has changed. Both the cardiologists on the ACHD team and the high-risk OB (maternal-fetal medicine) specialists understood my history and how my heart works. They knew how pregnancy could affect my heart and helped me to understand those changes, too. My team worked together side-by-side with me to individualize my care and help keep my baby and me safe.
They’d tell me, “You’re fine. We got this.” And I believed them. There were a lot of unknowns, but there was even more certainty that they were on top of things as my pregnancy progressed.
Managing Care as an Adult
Now that I’m an adult, I trust the Adult Congenital Heart Disease program with my heart care needs. I go for yearly visits with my cardiologist and any testing that I need to monitor my heart’s condition. Obviously, I have a lot more say about my care than I did as a child. The foundation I received when I was younger has been invaluable.
I’m very aware of my heart’s health. I think I pick up on anything that has to do with increased heart rate, chest, pain or increased respiration. Whether it’s anxiety, muscle pain or I’m not 16 years old anymore. I’ve been taught to pay attention to my body. If something was actually wrong, then I would be quick to notice it. And I’d know exactly where to go to get it taken care of.
Read Next: Regular check-ins with an adult congenital cardiologist are important in managing your health when you have a heart defect. Find out if you or a loved one should be seeing an adult congenital heart specialist.